Follow up to feeling confused and overwhelm... - Care Community

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Follow up to feeling confused and overwhelmed.

Rienij70 profile image

Finally had a reasonable week, or should I say a productive week. We had the Neuro nurse here on Monday. She comes to assess my husband every 6 month. She agreed that his memory is deteriorating more. And also that I could do with support. She would as per normal write to our GP. On Tuesday we finally had the Lady here from the dementia services. I must admit was very impressed with her. Maybe because she said that I was doing a fantastic job. 😀 And she agreed that I need support, and to look after myself a bit more. I now have to register so that in a emergency someone can come and look after him. She also recommended that we should have the higher rate of attendance allowance, plus the reduction in the rates. She is going to put everything in writing, so I am waiting to read it and digest it a bit more. But I really don’t want any stress trying to sort that. Next month we are going to the dementia cafe for lunch. Where we can meet people like us in the same boat. But I do feel so guilty, as if I am doing things behind his back. And I don’t want him to think he is a burden. But I suppose we all feel like that. My daughter spoiled us with a lovely table and chairs for the garden, so we are enjoying the good weather in style. Thank you for listening. Rienij ☺️

17 Replies

Go to the dementia cafe, he should enjoy it. Also any other activities they have - in our area people can go singing, walking, coffee mornings with quizzes etc and many other things. It is a good way to meet people who understand.

Rienij70 profile image
Rienij70 in reply to

Thank you, it will be good to meet others in a similar position.

sassy59 profile image

It seems as if things are moving in a positive direction and it will be good for you to have more support.

Enjoy the dementia cafe, you’re not doing things behind your husbands back. You’re caring for him and doing a great job.

Take care xxxxx

Rienij70 profile image
Rienij70 in reply to sassy59

Thank you Sassy59, apparently the food is nice, so that is a plus. We will try it. Xxx

Hey Rienij! Garden furniture and garden looking lovely! You can get help completing forms from dementia services. Maybe ask if they have any local church lunch groups, or dementia matinee shows too? If there is a local village for the elderly, find out if they do activities, or they the local voluntary services. Know what u mean by feeling guilty, ' am I forcing the issue? Is it for him or me? Why do I have to get everything sorted, when all I've done is asked for help?' And as they say on advertising....and so much more!! If you believe in destiny/karma, you won't be given any more than you can cope with.

Rienij70 profile image
Rienij70 in reply to lell1

Hi Lell, thank you one day at the time eh. At the moment the heat is getting to me and Ted. So we just try to stay cool if that is possible. The lady said she would put everything in a letter so I will wait for that. And just maybe once we get to know some people at that cafe, they might know of some more activities. I am more hopeful now. 😊 take care of yourself Rienij

Hi, I work with people with dementia and what you are experiencing with feeling guilty is very common amongst carers. You are doing this for his best interests and it is quite often less distressing for him to just go ahead rather than have to explain something that he might not have the capacity to understand. I don't think carers sometimes realise what a fantastic job they are doing. In the service I work in we really appreciate carers and quite often marvel at their fortitude and resilience in such difficult circumstances. It is hard to come to terms with living with a person who is not the same in terms of their behaviour as the one you married. I am so pleased that you are using the services around you. They are also struggling with the volume of referrals and the complexity of their jobs, but I can assure you that professionals working with people with dementia and their carers are dedicated to making life more pleasurable and easier for them. Finally, what a lovely daughter you have! The seating looks wonderful and will give you hours of pleasure as you can sit out in nature enjoying the beautiful summer we are experiencing. Lots of love and hugs to you and your family.

Rienij70 profile image
Rienij70 in reply to Hellebelle

Thank you for your understanding, and support. Xx

Callendersgal profile image

Hi Rienij70

Thanks for your update and love the new garden furniture! A fabulous surprise for you and talk about timely, with this current lovely weather.

So nice to hear you feel you've had a productive week, and are left feeling that help is out there for you.

I totally agree with everyone else that you should go along to the dementia cafe and I'm sure you'll find strength in being with others in the same situation as yourself and that you'll both enjoy it.

Try not to feel guilty. You aren't going behind your husband's back. You are being totally caring, loving and supportive. You can't do any better than that!

Very best wishes.

Thank you. Xx

Hi you are doing a marvellous job especially as you are having to adjust to such a huge change in your own life at the same time. When you look back on this time from a future when you are used to the fact that all the decisions have to be made by you alone you will be amazed that you ever felt guilty. When you are in an equal partnership with your husband or wife, going behind their back is a nasty thing to do. Sadly, things are changing and you have to adapt to the idea that this is now changing into a totally different relationship. FredaE

Rienij70 profile image
Rienij70 in reply to FredaE

Hi FredaE, you are probably right. I sometimes wonder what he thinks when we are talking about the dementia. Although he has been aware for some time. And about a year ago he made me promise to make the decisions for him, so it just must be me. I suppose seeing him every day we don’t notice the changes as much as other people. Thank you for replying Rienij xx

Its terribly wearing and soul destroying caring for a loved one with dementia,and getting any kind of help does become overwhelming,and it seems the stock answers you have had were exactly the same as mine....''you are doing a marvellous job and you need support,and you must look after yourself'',and initially I must admit I was also rather impressed.

I also used to take my partner to a Dementia Café,which was very good in that one were meeting people in the same boat,but its now well over a year since we could go as my partner is now totally bedbound and unable to even stand for more than say 3 minutes.

Its tough,but all of us that are doing the best we can in our caring role will always keep on keeping on.

Its a very tough time for you and everyone who comes here from social services and dementia care seem to come up with the exact same comments..''you are doing a wonderful job'' and I am sure they are told to say this ,it seems to be the stock response.

And then ''you must look after yourself too'',but they need to put those words into action because nothing ever changes.

However I do wish you well as I know how draining it can be.

Rienij70 profile image
Rienij70 in reply to secrets22

Hi secrets22. Things have dramatically changed here for me. I was diagnosed with bladder cancer last September, had twice a tumour removed, after the second op was home two days when my hernia got incarcerated and needed an open repair, than on the way home I had a stroke followed six weeks later by phuemonia. So I had to put my husband into a care home. Where he still is today. There is no way I could look after him now anymore. I must say it feels strange, it is like being a widow without being able to move on. Now that it is all over, I only now realise how much pressure I was under on a daily basis. . And all you carers who are doing such a wonderful job without any help, I salute you from the bottom of my heart. Xx Rienij

secrets22 profile image
secrets22 in reply to Rienij70

Oh Rienij70...… have been through so much and my heart cries for you with so many awful things which has happened and its so difficult to keep on going.

My partner is at home but does'nt talk and barely eats and I too feel very much alone,and its hard to keep everything going on ones own.xx

Rienij70 profile image
Rienij70 in reply to secrets22

Yes it is hard to keep going, but what else can you do. Try to make the best of a bad situation. I went to a hospital appointment today on patient transport. On there with me was a man halve my age whose life had changed in a split second doing his job. He had his leg amputated. So I counted myself lucky. I just take each day as it comes now. Xx Rienij

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